Revolutionary new Direct-to-Patient Registry brings together clinical, genomic, immune and longitudinal data to accelerate precision medicine
Norwalk, Conn., October 10, 2019 – The Multiple Myeloma Research Foundation (MMRF) announced today the launch of its Direct-to-Patient (DTP) Registry, a cornerstone of its CureCloud® Initiative. By going directly to patients with an online consent, any patient diagnosed in the contiguous US can participate. This registry provides patients with an opportunity to contribute their data safely and securely to the MMRF CureCloud, a comprehensive data repository that will aggregate and visualize many types of data. It is the first to include longitudinal clinical, genomic, and, eventually, other types of data, including immune profiling, to accelerate the delivery of precision medicine to multiple myeloma patients.
According to MMRF research, 93% of patients are willing to share their data to advance treatments. Yet, most patients have not done so because until now, there wasn’t an easily accessible, central platform. The MMRF recognizes that patient data is one of the most significant needs in medical research and created the DTP Registry to help make data sharing easy, which will ultimately accelerate personalized treatments through the insights the data will provide.
“Patients understand that there is an urgent need for more people to donate their data,” said Kathy Giusti, Founder and Chief Mission Officer of the MMRF. “This understanding led me to be among the first patients to share my data, and the hope is that, through this revolutionary initiative, we continue to break down barriers that make data sharing difficult and use this information to find more precise treatments that allow people to live longer and healthier lives.”
By going directly to patients, the MMRF has made the process of data collection both simple and efficient. Patients consent online and e-sign a medical waiver, allowing the MMRF to secure their electronic health records (EHR), and a phlebotomist will collect a blood sample at a location and time determined by the patient. Samples will be sent to a central laboratory for DNA sequencing and stored within the MMRF Tissue Bank for future immune profiling.
After the samples and medical records are processed, anonymized and analyzed, the information will be uploaded to the MMRF CureCloud. The collected data will be used by researchers to identify new targets and develop hypotheses whereby doctors and patients can make informed data-driven clinical decisions.
In the future, doctors, clinicians, researchers and patients will have access to data within the CureCloud to address the most critical questions facing the community. The CureCloud will also contain existing MMRF data, such as CoMMpass, the largest genomic dataset of any cancer. This effort is part of the MMRF’s three-year plan to advance scientific research and transform cancer treatments for patients through precision medicine.
“Data is our strongest weapon against cancer and disease, which is why such a large-scale data collection and aggregation effort is necessary to inform critical treatment decisions as it helps make medicine more personalized and precise,” says Steve Labkoff, MD, Chief Data Officer of the MMRF. “We are thankful to our amazing partners, donors and the 79 patients who participated in the pilot program thus far, who have enabled us to launch this effort which will undoubtedly accelerate our ability to find a cure for every patient.”
About Multiple Myeloma
Multiple myeloma (MM) is a cancer of the plasma cell. It is the second most common blood cancer. An estimated 30,770 adults (16,400 men and 14,730 women) in the United States will be diagnosed with MM in 2019 and an estimated 12,770 people are predicted to die from the disease. The five-year survival rate for MM is approximately 47%, versus 31% in 1999.
About the Multiple Myeloma Research Foundation (MMRF)
A pioneer in precision medicine, the Multiple Myeloma Research Foundation (MMRF) seeks to find a cure for all multiple myeloma patients by relentlessly pursuing innovations that accelerate the development of precision treatments for cancer. Founded in 1998 by Kathy Giusti, a multiple myeloma patient, and her twin sister Karen Andrews as a 501(c)(3) nonprofit organization, the MMRF has created the business model around cancer—from data to analytics to the clinic. The MMRF identifies barriers and then finds the solutions to overcome them, bringing in the best partners and aligning incentives in the industry to drive better outcomes for patients. Since its inception, the organization has collected thousands of samples and tissues, opened nearly 100 trials, helped bring 11 FDA-approved therapies to market, and built CoMMpass, the single largest genomic dataset for any cancer. Today, the MMRF is building on its legacy in genomics and is expanding into immune-oncology, as the combination of these two fields will be critical to making precision medicine possible for all patients. The MMRF has raised nearly $500 million and directs nearly 90% of the total funds to research and related programs. To learn more, visit www.themmrf.org.